Dreading Caelyx ( and future in general)

I started 3rd line chemo with carboplatin/caelyx eight weeks ago. I never got to the 2nd cycle because all hell broke loose in my bowels. Gripes, stoppage, violent uncontrollable diarhoea in that order over a couple of weeks then finally a fistula so I am in nappies stuck between bed and loo awaiting a multidisciplinary team decision about what to do next. This will probably be surgery. Meanwhile my CT scan shows that the tumour has begun to invade my bowel in another place. I will probably be prescribed chemo again when the fistula business  is resolved and am now terrified of caelyx. What experience have others had with caelyx? and what are the alternatives for 3rd line ? I daresay my onc will put it down to coincidence but it is not a coincidence I want to repeat ! Any experience or suggestions will be very welcome. I feel very alone with this ! I was so full of energy a few weeks back until suddenly wham! full invalid status and can't see the light at the end of the tunnel.

10 Replies

  • I cant give any advice but I send you virtual hugs and lots of sympathy. You have been through an awful time and are still suffering so hoping that your MDT makes a swift decision and you can start to feel in control and mend. Ihad a very small anal fistula some years ago and I remember only too well the pain and discomfort so I hope you are managing to keep that under control. I am so sorry that you feel alone, make sure you post here as there is always someone to listen. Is there anyone you can speak with? Ruth, the Ovacare nurse, is often recommended so it might be worth speaking with her. 

    Thinking of you and sending you thoughts and healing prayers.


  • I had caelyx on its own, but only managed 4 of 6 because I came out in a full body rash over a few weeks, it was like severe sunburn. I was stopped from taking it because if I continued my onc said I would need a skin graft. I had to have Moo cream that you only get from America through Amazon to keep the rash cool. Sorry to hear about the bowel complications, sincerely hope you get sorted soon. I went straight onto carboplatin after caelyx so I had 10 months straight chemo.

  •  fThat doesn't sound good at all. I hope the carboplatin did some good after the long 10 months. It is good to know it can be given separately. My junior oncologist said there was no plan B, that all were equally t now in the hands of the senior oncologist so I am hoping for a more positive attitude.  It is so nice to know there are helpful people out there. Thankyou for your reply. Best of luck to you, Liz

  • Sending you a big virtual hug xx Sounds awful. Please feel free to share your frustrations here we are all there for you. Best wishes xx Trish

  • Many thanks Trish. This is such a kindly site. Liz

  • Oh dear , such hell . I too had the dreadful rash and had to give up . That was early 2015 . Body then rejected rather violently Carboplatin , just had too much of it . Weekly , low dose Cisplatin until August and I am OK ish at the moment . Most tumours in retreat , some growing . My experience has been that they will keep trying ...you have to show them that you are mentally resilient and up for whatever they offer . Portion for the rashes and almond oil in the bath soothed the skin eventually xx Nil desperandum xx

  • I hope I am still up for anything !. I have to wait and see if they offer surgery or chemo or some mix. At the moment i am trying to inform myself ahead of time because incontinence plus exhaustion beyond a trip to the bathroom ain't a bundle of laughs and i am reluctant to think something can't be done. i was so full of energy 5 weeks ago. Many thanks for your help. I hope it will go well on cisplatin for you,


  • Piriton x

  • Hi I too had terrible tummy problems with caelyx I managed 4 doses but had terrible cramps and and  integestion, it actually felt like my insides had been burnt and were red raw .my ca125 actually increased greatly,  I was so pleased to be back on carbo/taxol, Something I never thought I'd say !!!  I did read some do have good results with it so I wish you lots of luck if you carry on with it . Jue x

  • Juejue, What a nightmare ! My memories of taxol are not happy ones but it sounds as though you had a far worse time with caelyx. i am g;ad to know all the evidence because i am deeply suspicious of doctors pronouncements about this, The truth is of course that there is a lot they do not know and sometimes they sound as though they do - at least one of mine worries me in this way. In all fairness others are  reassurance itself. Many thanks and the best of luck with your treatment, LLiz

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